Monday, April 27, 2009
This weekend, our family will again be participating in the 2009 Walk for Wishes to raise money for the Make-A-Wish Foundation of Central New York. The CNY Chapter had granted over a thousand wishes to children who are living with life-threatening medical conditions. As some of you may know, the Make-A-Wish Foundation granted Michael's wish this past summer. You can read about Micheal's wish here.
In honor of Michael, we is walking with the goal of raising $1000 for Make-A-Wish. If you would be willing to help us reach our goal, you can click here to go to our team page and help us in our efforts to support the Make-A-Wish Foundation of Central New York. If you would prefer to make a donation to your local Make-A-Wish chapter, you can locate it here.
Thursday, April 23, 2009
Dr. Korones said that there will always be a chance that the tumor could come back but that based on the history of how Michael's tumor reacted to chemo, he thinks that it is less likely to come back. The game plan now is Micheal's antibiotic once a month for six months in Syracuse, back to Rochester for an MRI on August 13th and then every three months after that for a year. If everything goes well during that time, we then go to MRI's every six months for a while and then eventually every year.
It feels like we have come to the end of this leg of our journey and hopefully it was the most difficult part. This seems like a good point to convert this blog to a book for Michael to have and keep when he gets older. I will continue to post on here to keep everyone updated but it may not be as regularly. We are still on the hunt for a puppy and we also have the Make-A-Wish Walk for Wishes in a couple of weeks. Michael's birthday is around the same time, then t-ball is in June and soccer is in July. And let's not forget Kindergarten graduation! We have also rented a house on the beach in Cape Cod and will be spending a week there doing nothing (and loving every minute of it). I will make sure to share all of those things with all of you.
In the meantime, I want to thank everyone for their positive thoughts and prayers. Jeff and I believe that you all helped us achieve our positive outcome and without all of the support we have received, this may have all turned out differently. And we would like to ask that you continue to keep Michael in your thoughts and prayers. Take care, JoAnne.
Tuesday, April 21, 2009
The Easter bunny always leaves the Easter baskets on the fireplace hearth. He must come down the chimney like Santa Claus. He also hid some eggs in the house for Michael to find. I think he realized it was just too cold to hide them outside this year.
She had a basket full of surprises for Michael and all of his young cousins.
Including their own little filled Easter basket and balloons.
And then after dinner ...
... there was a magic show (with a professional magician). Michael even got a turn as the magician's assistance and helped pull an egg out of an empty bag.
Friday, April 10, 2009
We took a cake as a small Thank You to the staff of 5C including (but certainly not limited to)....
Michael received an Easter basket from Britney and he got to meet the Easter Bunny. The Easter Bunny was accompanied by the county Sheriff and one of his deputies and they gave each child in the clinic a book and a stuffed bunny.
And although chemo is over, we will be seeing everyone (except the Sheriff and the Easter Bunny) next week. Starting next Friday, Michael will be going to the clinic once a month for 6 months to receive his IV antibiotic. And of course he will still be having his MRI's every 3 months for a while.
Dr. Kennedy wants to leave Michael's port in for 6 to 12 months to be sure that he doesn't need chemo again. She said 30% of the children that go through the chemo regimen Michael just finished, don't ever have to have chemo again. The other 70% - well, you know. Let's hope that Michael is in the 30% pool. Please keep Michael in your thoughts and prayers, JoAnne.
P.S. I almost forgot to share our GREAT news - I spoke to Dr. Wang's office today and there was no seizure activity during Michael's EEG. Yeah!!! Let's hope that I can convince Dr. Wang to let us try taking Michael off of the Tegretol when we see him next month.
Thursday, April 9, 2009
Wednesday, April 8, 2009
Tuesday, April 7, 2009
And they aren't just there for Michael. A couple of weeks ago, Michael and Daddy pitched a tent and had a sleepover in the living room so I had the whole bed to myself. When I commented on that the next morning, Michael piped up and told me that I wasn't alone - that he had sent his animals in to keep me company so I wouldn't be afraid. I was happy to hear that. Especially considering they took up much less room in the bed than one full-grown husband and one restless little boy.
I don't know how long this menagerie will continue to live in Michael's pocket as he mentions them less and less. But, for now I am glad they bring my little boy some comfort during moments of stress. And they also act as a signal to me to know when Michael is feeling a little worried.
Please keep Michael in your thoughts and prayers, JoAnne.
Monday, April 6, 2009
Which is a good thing since his morning didn't start out very good. He was kind of quiet during breakfast but he got on the school bus without any complaints. Unfortunately, shortly after getting to school, he wound up in the nurses office with a belly ache. The school nurse said he laid down for a couple of minutes and then seemed better and went back to his classroom.
If I had to venture a guess, I would say that Michael is a little apprehensive about his EEG on Wednesday. We explained to him what they were going to do and tried to reassure him that it wouldn't hurt at all but I think in the back of his little mind, he is still worried (that is just the way he is). I will be so happy when the day comes that all of these medical tests and procedures are few and far between. Please keep Michael in your thoughts and prayers, JoAnne.
Sunday, April 5, 2009
We will be going to Rochester on Tuesday night for an appointment on Wednesday. Dr. Wang (Michael's neurologist) wants to do an EEG to see if he can detect any seizure activity. If there aren't any seizures, we can try weaning Michael off of the anti-seizure medicine he has been on since July 2007. Even though the bulk of the tumor is gone, the scar tissue can still cause seizures but let's hope that isn't the case. That would be a big relief. There is a danger of organ damage with these types of medicines so I would really love it if Michael could stop taking it.
Michael has to be "tired" for his EEG so the plan is to keep him up very late Tuesday (probably by swimming), get him up early on Wednesday and then spend the morning at the toy museum playing hard. His test isn't until 2:15 pm but we knew that if we drove to Rochester on the day of the test, there would be a good chance that Michael would fall asleep in the car (he always does on long trips) and then wouldn't be tired for the EEG. That is why we are going down the night before.
So, we are going to have a very busy week - we'll be in Rochester Tuesday and Wednesday for lots of swimming, playing and an important medical test. We will be in Syracuse for our last chemo treatment on Friday and then we are traveling to Jeff's Aunt's home in Albany for Easter dinner on Sunday. Of course things have been kind of hectic here for the last couple of weeks anyway. Jeff flew to Indiana for a week of special training a few weeks ago and spent most of last week in Buffalo for the same reason. He got home just in time to make it to Michael's square dance show Thursday night - which was awesome.
Michael even dressed the part with a cowboy hat, plaid shirt, blue jeans and John Deere cowboy boots.
Michael and his dance partner did a great job!
They did two separate routines and all of Michael's classmates danced their little hearts out.
In other news, Brian has a wonderful new girlfriend, Jeanine, and we have actually been seeing them a lot lately (thank you Jeanine). Michael is absolutely loving the time he gets to spend with them. Hopefully with the passing of winter, we will get to see Jenny and Ralph a little more also.
I will post and let everyone know how things go on Wednesday. Please keep Michael in your thoughts and prayers, JoAnne.